Lack of federal LGBTQ + data collection for the impact of the coronavirus pandemic

BOSTON – Despite demands since the onset of the COVID pandemic for the U.S. government to improve data collection for LGBTQ patients, the Centers for Disease Control & Prevention still fails to issue national guidelines to states on the issue, a health expert on the matter told Blade.

With a renewed focus on COVID infections reaching new highs just before the start of the holidays amid Omicron’s emergence, the lack of any LGBTQ data collection – now across the Trump and Biden administrations – remains a problem. sore spot for health experts who say the information could be used for public education.

Sean Cahill, director of health policy research at the Boston-based Fenway Institute, said Wednesday that major federal entities and hospitals have been collecting data to find out whether patients have identified as LGBTQ for years – such as the National Health & Nutrition Examination Survey, which has collected data on sexual orientation since the 1990s – but the CDC has not duplicated that effort for COVID even though the pandemic has been ongoing for two years.

“It’s not like it’s a new idea,” Cahill said. “But for some reason the pandemic has hit, and all of a sudden we realize how little systematic data we are collecting in our health system. And that’s a real problem because we’ve been almost two years into the pandemic, and we still don’t know how it affects this vulnerable population that is experiencing health disparities in other areas. “

The Blade was one of the first media outlets to report the lack of efforts by states to collect data on whether a COVID patient identifies as LGBTQ, in April 2020 reporting the lack of data even in places where it is find influential LGBTQ communities. The CDC has not responded to requests from Blade for nearly two years on why it has not asked states to collect this data, nor this week to a request for comment on this article.

Cahill, who has published in the American Journal of Public Health on the importance of LGBTQ data collection and reporting in COVID-19 testing, care and vaccination – said he had advocated with of the CDC to advise states on whether COVID-19 patients identify as LGBTQ since June 2020.

Among those efforts, he said, were to include two comments he gave to the Biden task force on COVID-19 health equity in the spring of 2021, a letter that a coalition of groups sent to the Association of State and Territory Health Workers urging states to collect and report SOGI in COVID in December 2020 as well as letters to HHS leadership and congressional leadership in the spring and summer of 2020 to their asking to take action to encourage or require the collection of SOGI data in COVID.

When asked what CDC officials had to say in response when he brought this issue to their attention, Cahill replied, “They listen, but they don’t really tell me.

“We have argued this case and to date, as of December 22, 2021, they haven’t issued any guidelines, they haven’t changed the case report form. I hope they are doing it, and maybe we will be pleasantly surprised in January, and they will come up with something … I really hope that is true, but at the moment they do not. do nothing to promote SOGI Data Collection and Reporting in Surveillance Data. “

In other issues with LGBTQ data collection, there has been a history of states resisting federal mandates. The Trump administration, for example, has repealed guidelines calling on states to collect information on whether youth in care were identified as LGBTQ after state complaints about the Obama-era process, much to the dismay of advocates of LGBTQs who said the data was useful.

The White House’s COVID-19 health equity task force has at least recognized the potential to improve LGBTQ data collection efforts. Last month it released an implementation plan, calling for “an equity-focused approach to data collection, including sufficient funding to collect data for groups who are often excluded from data collection. data (eg… LGBTQIA + people) ”.

The plan also provides for a ‘fund[ing] activities to improve data collection… including tracking COVID-19-related outcomes for people of color and other underserved populations, ”and specifically calls for the collection of LGBTQ data.

The importance of LGBTQ data collection, Cahill said, is based on its potential use in public awareness, including efforts to recognize health disparities in the population and to create awareness messages, including included for populations who may be reluctant to take the vaccine.

“If we see a disparity, we can say: why is this? Cahill said. “We could do population focus groups – try to figure out and then what kind of messages would reassure you and make you feel comfortable getting a vaccine, and we could disseminate those messages through health education campaigns. public health services conducted by local state health departments run by the federal government. “

LGBTQ data, Cahill said, could be further broken down to determine whether racial and ethnic disparities exist within the LGBTQ population, or whether LGBTQ people are likely to suffer from the disease in certain regions, such as the South.

“We have data showing that lesbian or bisexual women and transgender people are less likely to receive routine preventive care for their health,” Cahill said. “And so if that’s true, there’s a good chance they’ll know less where to get the vaccine, than have a healthcare professional they trust to talk about it today.”

Among the supporting leaders, Cahill said, is Rachel Levine, assistant secretary for health and the first openly transgender person confirmed by the US Senate for a presidential nomination. Cahill said he raised the issue with her with other Department of Health and Human Services officials three times in the past year.

In his previous role as Pennsylvania’s health secretary, Levine led the way and made his state the first in the country to set up an LGBTQ data collection system for COVID patients.

“So she certainly understands, and I know she supports it, but we really need the CDC to take action,” Cahill said.

Although the federal government remained adamant in its actions, Cahill said the situation improved between the states and counted five states – California, Pennsylvania, Rhode Island, Nevada and Oregon – in addition to DC among those who did. chose to collect data on sexuality. orientation and gender identity of COVID patients.

However, Cahill said that even these data collection efforts are insufficient because these jurisdictions have simply made the data collection public, but have yet to report anything.

“Only California has released data publicly, and the data they report is really just the completeness of the data,” Cahill said. “They don’t report the data themselves… And they also just ask people who test positive. So if someone says positive for COVID in California, a contact tracer follows that person and asks them a battery of questions, and among the questions that are asked are SOGI questions. “

As a result of those efforts, Cahill said, California has data on the LGBTQ status of COVID patients, but the data is extremely comprehensive for the gender identity of these patients rather than their sexual orientation. In May 2021, California reported that it had data on sexual orientation for 9.5% of people who died from COVID and 16% of people who tested positive, but for gender identity the data was by 99.5%.